Thursday, 31 December - Farewell 2009!
Another rainy day, although it did clear up this afternoon. Drew stayed home whilst Dad and his brothers went shopping to spend their Christmas vouchers - still can't go to shopping centres or crowded places yet. Mariners went down, not a good way to end the year, although Drew spent New Years playing soccer on the playstation with his brothers, I think the Mariners won on the playstation :0). But it is a relief to say goodbye to 2010, it hasn't been all bad though, we have met some really lovely people and dedicated caring professionals and Drew has had some experiences which have brightened what has been a truly difficult year. Best of all my truly remarkable, inspirational, brave boy is in remission. Fingers crossed that next year is better.
Wednesday, 30 December 2009
Drew enjoyed the day at home with his brothers, riding the scooter around the garage and finally in the early evening a session down the nets - he was a happy boy!!
Tuesday, 29 December 2009
Back to John Hunter today for Drew's blood test. Being Christmas time their isn't a lot of staff on, so we went around to the Pathology department to have Drew's bloods done. That was my first mistake - unfamiliar surroundings. Unfortunately, virtually no blood came out of his finger, which meant we had to get it out of his vein. Drew was none to happy about that, the good thing about having it done in pathology is thats what they do all day, stick needles in people, so they're very good at it, it was just convincing Drew of that! We went outside and I had a chat to him and he let me put the cream on his arm (which numbs it so he doesn't feel the needle), we then went for a walk and he was full of beans and ready to go back to pathology. I'd asked for the best person to do it and they said that was Lilly. So attempt number 2, I was taking off the plastic covering and the last little bit pulled the hair on his arm, mistake no. 2. The tourniquet was on, cream off, we were doing the breathing and then the wheels came off, Drew started to resist and get cranky and then so did Mum. Back to the Day Unit we went, with Kurt in tow. Drew and I had words and I left to have a coffee and regain some composure and let Drew come around as well. When I came back he was happily playing with Kurt, I was still upset wondering how we were going to get this done and how long was it going to take. Around 12pm (we have now been here 3 hours and seen others have blood, see the Dr and go home) I put it to Drew again about having Lilly come around to the Day Unit for another attempt and he agreed, to my relief, but would he go through with it. Within 15 minutes Lilly was there, Drew co-operated, the needle was in and the syringe was full of blood before Drew could blink, I think even he was surprised. By the time the results came back and we saw the Dr, it was now about 1.30pm - a very long day. You can see the weight lift of his shoulders (mine too) and then he gets disappointed with himself that he couldn't do it earlier. Drew and I spoke about it at home and have decided we need to 'practice' every day at home and maybe have some more sessions with Jodie.
Monday, 28 December 2009
Rain again - where has summer gone? The boys are all getting on pretty well for being cooped up inside together for the last couple of days. Drew is still hankering to go outside and play cricket and I've told him I'm sure Dr Frank wouldn't be too happy with me if he slipped over and broke a bone - Um he huffs off back to the WII.
Sunday, 27 December 2009
Rainy again so no outdoor cricket for Drew, which miffed him a bit, but at least the Wii is getting a good work out.
Saturday, 26 December 2009
Dad, Kyle and Dane went and spent Boxing Day with family down near Camden, as there would be too many people for Drew, he, Kurt and I stayed home. The boys played the WII all day, and Drew is wondering why he is sore! Kurt is still waiting for his Christmas presents and Drew is very happy that he didn't go to hospital for Christmas.
Friday, 25 December 2009 - Merry Christmas
Kurt was very sheepish and Mum and Dad withheld his Christmas presents today, with the danger he put himself in, we really had to do something that had a major impact, along with a few other punishments. We did have a big family discussion and the boys told Kurt how it made them feel, when he was missing - I really don't think he'll do it again. He did start to complain about his aching legs and feet and we told him not to even think about going there. On a brighter note the boys enjoyed their presents, we were home and not in hospital and had a nice pleasant day at home. To everyone who has supported us and read Drew's blog over the past 12 months, thank you and we hope you had a really great Christmas. We also thought about those kids and families that weren't as fortunate as us and didn't get to spend Christmas at home this year, which made us appreciate it all the more. Kristin if you're reading this Merry Christmas, we have been following the temperature in Skedsmo, and no doubt it will be a very white Christmas.
Thursday, 24 December 2009
Drew and his brothers very excited today. Last minute cooking stuff. Although the night did prove 'interesting'. We were over our neighbours in the evening when Drew's brother Kurt got the poops and was sent home. He decided to storm off, barefooted instead. When 15 minutes later we realised he wasn't at home - we, several neighbours, and Kurt's best friend's parents, set off in cars and on foot to look for him. After 90 minutes without finding him, I rang the Police, 60 minutes later they rang back to apologise for not getting there yet and they too assumed Kurt would be somewhere pretty close and would come as soon as possible. A car pulled up 30 minutes later and out hopped Kurt, who was promptly sent straight to bed, as relieved as I was too see him, I could of killed him. A very kind mother and her daughter had seen Kurt walking on the side of the road, at Lake Haven, which is nearly 12kms away and had stopped to ask if he was OK, they thankfully drove him home at 11.30pm. Even the Police said they wouldn't have looked that far for him. For a couple of hours it looked like our world was going to turn upside down all over again, fortunately it all worked out.
Wednesday, 23 December 2009
Two sleeps to go. Morning cricket has been cancelled by the Chief Umpire (Mum) due to Drew getting a severe case of the poops when he gets out, comforting to know some things never change.
Tuesday, 22 December 2009
Drew and all his brothers are up early for the 'big' cricket series. Drew is counting down the days to Christmas and hoping that his GVHD stays under control for Christmas at home.
Monday, 21 December 2009
Up to the hospital this morning with Kurt in support. Drew needed 2 fingerpricks to get the required amount of blood. His results were good and after spreading a bit of Christmas cheer and getting a ribbing from Di and Captain Loopy about the Mariners and the Jets, we were out of there pretty early. It is a year since Drew was diagnosed as being in remission - time does go fast. The rest of the day was spent playing with his brothers.
Sunday, 20 December 2009
Well I'm sure all our surrounding neighbours love us - Drew and Kurt were up playing cricket at 6.00am on a Sunday morning, Drew with his yellow and blue zinc cream on screaming out HOWZAT! Drew spent the rest of the day at home with Dad and two of his brothers, whilst I took Dane down to Sydney to play soccer. When we came home it was down to the cricket nets for all the boys, where by whatever rules they were playing Drew won - which made him extremely happy. I'm sure the neighbours will be hoping for a sleep in tomorrow morning from Drew. I too will try not to get so far behind in his blog and apologise to those who have visited in the last week and a half to find nothing there, it is that time of year and I'm still trying to catch up, unsuccessfully, on work stuff from my 3 months away.
Saturday, 19 December 2009
Back up to Ronald McDonald House today for a portrait of the boys. A local company had generously donated their time to do family portraits for free, the boys quite enjoyed the attention and hopefully took a nice photo all at the same time.
Friday, 18 December 2009
Drew has decided that now that all the boys are on holidays and as he can't go out in the sun, he and Kurt will get up and play cricket in the backyard at 6.00am. Although this morning he was up at 5.15am watching Air Craft Investigation, his favourite show. The weather was the total opposite of yesterday with rain as well, so Drew wasn't too happy when I told him cricket was washed out and he couldn't play in the afternoon, the playstation would have to do.
Thursday, 17 December 2009
Today was a busy day. We went up to Drew's school this morning, where Drew and Logan (the other boy from school with cancer) were presented with a gift for them and their families from the school's teachers. Once Drew is allowed prawns again we will put this gift to good use with a special celebratory dinner. We then went up to RM House for Drew to have his assessment for the Learning Links Program. Drew was very nervous, even though I explained there was no need to be, and had to take his own pencil, just in case they didn't have one up there. Barb the Psychologist/Teacher who assessed him, was very impressed with the amount of work Drew had completed throughout the year and with his assessment results. We were all very pleased. It was then over to the hospital to see the Christmas pantomime, starring a couple of our favourite Doctors and nurses and then the rounds wishing everyone Merry Christmas. Drew and Dane also ran into Santa and Mrs Claus and put their orders in for Christmas. When we came out of the hospital it was like a furnace, the temperature was so hot!!! Drew has now started his school holidays too.
Wednesday, 16 December 2009
All going well and to plan, today should be the last day that Drew and I are home together, with the boys starting holidays tomorrow and Drew returning to school next year. To mark the occasion we went and had lunch at a restaurant on the water at Swansea. We also had morning tea with Paula and a quiet afternoon.
Tuesday, 15 December 2009
Steroids down to 10mg today for the next week. Drew did some school work and had a quiet day at home.
Monday, 14 December 2009
Back up to John Hunter early today. Drew was having finger pricks instead of peripheral (cannula) blood taken so he wasn't too nervous. Although it did take 3 finger pricks and there were clots in it, but they got the cyclosporin level which is the important one at this time. Even though Drew was coming back up on Thursday for his learning assessment Dr Frank didn't want to see him until next Monday. Dr Frank is going on holidays next week and hopefully when he comes back in 3 weeks, Drew will be on fortnightly visits. We popped into school as it was class party day. Drew wasn't allowed to eat anything, or get too close to anybody, but he got to see his class mates and some of his teachers and wished them a Merry Christmas.
Sunday, 13 December 2009
Drew set off with big brother Kyle today for a walk to the paper shop to get his paper. I was fully expecting a phone call to come and pick him but he made it there and back. Kyle also thought it was a good idea to go the hilly way rather than along the flat bike track, so it was a double achievement on Drew's part - his leg muscles did pay for it later in the day. Drew was very impressed with the story and his photo in the paper, although Dad was a bit miffed that the dog got a mention and he didn't. http://www.smh.com.au/national/call-for-donors-as-christmas-blood-supply-drops-20091212-kpkd.htmlSaturday, 12 December 2009
Today was quite a warm day - Drew got to stay home with 3 of his brothers as Mum rushed up to Newcastle to take Kurt to a Canteen Christmas party, down to the Central Coast to register the older boys for soccer, back up the Central Coast to pick up new glasses so she can see (multifocals - yuck), bit of Christmas shopping, 6 phonecalls in between from the kids, ranging from where was I, when will I be home to do you put a lid on the noodles when you're cooking them, then back up to Newcastle to pick up Kurt. I think life is back to normal, being down in Sydney for 3 months is starting to look like a 'holiday'.
Friday, 11 December 2009
Drew was home again today, as it was Year 6 Graduation Day and Drew's brother Kurt was graduating. Drew is now on 12.5mg of Prednislone (steriods) and touch wood all is going well. He is getting very excited about the World Cup now that the draw has been completed, but as yet he hasn't heard anything from the Make A Wish Foundation, so it is a matter of trying to keep a lid on that with him.
Thursday, 10 December 2009
Drew stayed home while I went to his brothers' Presentation Day at school. Afterwards I went into his class and we 'skyped' back to Drew, he 'handed' his classmates the Rein deers he had been busily working on - and they loved them. In the afternoon, the photographer came to take our picture for Drew's article on Sunday. He was a really nice person and chatted away while he snapped his photos - Drew quite enjoyed the moment and is looking forward to seeing Sunday's paper.
Wednesday, 9 December 2009
Drew was busy making Christmas craft for his classmates today and fitted in a bit of schoolwork in between, but no playstation - that must be a first. Backyard cricket was the go with his brothers late in the afternoon. Drew also spoke with a journalist from the Herald, who is doing a story on blood donations, which Drew will feature in, it will appear in this Sundays Sun Herald - he was quite excited about that.
Tuesday, 8 December 2009
Drew's steriods have been reduced this week to the dose where his GVHD flared up last time, so hopefully the time period in between has allowed the GVHD to peter out, the last thing we want is to be in hospital at Christmas time. Drew has been into his school work and going through the teams in the World Cup, he is very excited about the prospect of going - so fingers crossed - and still going on about Dr Frank having no faith in Australia - I think he is emotionally scarred :o).
Monday, 7 December 2009
Back to John Hunter today for Drew's blood level to be taken. It was a mixed bag, Drew was in a really good mood, but when Dr Jess came in to take his blood, he got really upset and didn't want it done. He calmed himself down and Jess stuck in the cannula, only for his vein not to want to give up any blood :o(. Drew was really angry. Dr Frank came in and said he was happy for Drew to have a finger prick and that he didn't have to come back until next Monday, this cheered him up and he happily had the finger prick. Drew and Dr Frank got into a discussion about the weekend football and the World Cup. Dr Frank told Drew that if he gets his wish to go to the World Cup (through the Make A Wish Foundation) that he better go early as he doesn't think Australia will make it to the second round - Drew told him in his forthright manner what he thought about that!
Sunday, 6 December 2009
Aunty Trish & Aunty Bev visited today, bringing a signed Brett Emerton polo shirt and Socceroos cap for Drew - he was very excited about that. Playing cricket once the sun had lost its heat, playing the playstation and watching Australia in the hockey filled the rest of Drew's day today.
Saturday, 5 December 2009
Yes we got out of bed at 4.00am to see the World Cup Draw (which they didn't draw to 5.00am). Drew was kept busy throughout the day writing down each teams schedule, even though it will be printed in tomorrow's paper, he is definitely into stats. We watched the A-League in the evening, but unfortunately the Mariners didn't win tonight, but the Jets did, so Drew is going to cop it from Dr Frank on Monday.
Friday, 4 December 2009
Drew did some school work and Christmas craft today - he is making some special things for his classmates. He is also counting down the hours to the World Cup draw, we are getting up at 4.00am tomorrow morning to watch it. I think I am mad. Drew was excited to see Kurt when he returned from his 3 day excursion to Canberra tonight - Kurt was in bed within the hour of returning home - obviously had a good time.
Thursday, 3 December 2009
Drew's bloods were good today and there weren't any dramas getting the blood - Drew was relieved and proud of himself. We went for a short jaunt to Newcastle to get a couple of things and you would think that a boy who has spent so much time in hospital would be eager to get out and about, but no he just wants to get home (and have lunch).
Wednesday, 2 December 2009
Drew and I were very excited to receive a wedding invitation in the mail today - in Norway next May. Hopefully Drew will be in good health and we will be able to attend, although the temperature today was -12C, so we will definitely be rugging up. Drew is powering away at his school work and thinks if he's not a sports 'star' he'll be a sports statistician.
Tuesday, 1 December 2009
Today was one of the first steps in Drew going back to school next year, with an assessment arranged with the Ronald McDonald Learning Program in two weeks. This will show where he is up to and what extra assistance he will require next year. We also lowered his steriods down to 15mg today, we are now getting to the dodgy dose said Dr Frank - meaning it was around this dosage that Drew's GVHD flared up before, so fingers crossed.
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